Cardiologist just rang, he said he's going to inplant ICD on Monday

[macwoozy]

I was not expecting this, well certainly not so soon. I've been abit stressed lately and the stress seems to have worsened an existing heart problem. So they want me in on Sunday to do procedure on Monday. I can't believe how excited I am, to be able to live my life without worrying about my palpitations ever again. He spoke on the phone about the procedure but I'm hoping that maybe some of you might know someone who already has one. I can read enough about it on Internet, but I'd love to have a personal view on it. Misdee, I know Peter has had one recently, and obviously its such a small operation compared to his recent events, but would you be able to give me any advice about it, I totally understand if you'd rather not what with all you're going through. I can't get my head round this, I've wanted this for such a long time.

Hi, Macwoozy - he was given amiodarone when he ahd his last episode - he was flown by air ambulance to mainland hospital, when he arrived his hr was so high they gave him two hits of cardioversion and amiodarone. Unfortunately he had an extremely adverse reaction to amiodarone and his hr plummeted to 15bpm and it was v touch and go. so his consultant has said he must only have cardioversion if he has future episodes.... his consultant told him it was 99% likely he'd have an ICD (esp because of where he lives) - but he wanted to do a MRI scan before impanting one. waited 3 weeks for MRI, wuich showed absolutely no abnormalities. so they let him out the next day and are seeing how he gets on just on betas. really scary - we all (except my dad!) sort of wish we had the reassurance of an ICD. reallly good to hear you are getting on well with yours. great news. take care

thanks macwoozy, i think its the fear factor with my mum, she avoids doctors etc like the plague if she can, but her symptoms have def got worse since she started her menopause.

macwoozy, Peters not too doing too great, he had an awful infection which set his ICD off 5 times in one day, but he is slowly getting better. atm, is back being bed ridden most of the day, as the infection and ICD have wiped him out. as soon as he can he'll be back on the exercise bike getting stronger. needs to get back on the list.

misdee I'm sorry to hear that about Peter

Sending you my best wishes.

dinosaur, I'm doing pretty well, thanks for asking. Had an ICD check up on Friday, they said one of the wires leading to my heart has dislodged a fraction, they're not that worried, just have to keep an eye on it, but otherwise everythings really good. I think I've just got to calm down abit, I feel my ICD has given me a new lease of life, not having to worry about any arrythmias, but I'm no spring chicken anymore and have to remember that I've got to take things abit slower. How did your ds manage on his first day back at school with new teachers, different routines etc, did it affect him too much or is he able to take it in his stride? My ds is finally to be statemented, he's only 5 but it concerned me that the older he was getting, the harder it would be for him to get a statement.

Misdee, I am sorry to hear how much of a hard time its been for you and Peter. I must sound abit insensitive going on about how well I feel. My ICD hasn't gone off yet, and I'm dreading the day when it does. I can't even imagine how it must feel to go off 5 times in one day, he must get so apprehensive waiting for the next shock to happen. What an absolute nightmare this has all been for you and your family.

Really glad to hear you're doing well.

DS1 goes back to school tomorrow! I'm glad you've got the LEA to agree to your DS having a statement. Good luck with it all.

macwoozy, the ICD saved his life, we dont worry too much about it, as we know its there for areason. i asked him to describe how it felt so i could tell you, i asked if it felt like being kicked in the chest, he said it felt like being kivked in the chest by several horses, but bear in mind he is a mnan and tends to over- exargerate a bit

dinosaur,Sorry I'm jumping ahead of myself here, the LEA haven't yet agreed, it's the school that's agreed to push it through, although they can't envisage a problem, saying that though I've read on MN how difficult it can be getting a statement. Well hope all goes well tommorrow for you ds, I've just loved having the day to myself since he started at school. Bliss.

CRIKEEEEEEEYYYYY Misdee. Horses!!! That's something to look forward to. But good point about men and pain

Sorry,
Bit of hijack macwoozy, but what's the statement for your ds. I take it this is some kind of health thing?? Am wondering whether will need one for my ds who has RCM (or DCM, their not entirely sure which yet!)

Glad to hear you are doing well, you sound full of life - good luck to ya.

Hi Joanie, my ds is being statemented because he's autistic, so its not really a health issue. Although unfortunately he might well develop HCM, his next check up is in January. If your ds needs extra help during time at school because of his DCM/RCM then it might well be worth looking into. Sorry to hear about your ds. Will you be able to find out in the near future whether he has DCM or RCM? I've read a bit but RCM but have never actually met anyone suffering from this condition. How old is your ds? Did he inherit it?

Macwoozy,
Sorry, I thought afterwards that it might be something like that. You certainly seem to have a fair few loads in your life.
DS was born with condition. Was inherited. DH had DCM & had heart transplant in Feb. Doing brill. Dr is saying that due to advances in scanning & genetic anaylsis etc, they are now detecting many more symptoms of cardiomyopathy and current theory is now that there is a range of symptoms with patients showing combinations of restriction/dilation etc, so maybe the old HCM/DCM/RCM distinction is too crude. He also says that they now think that DCM is much more commonly inherited than they used to. He said that may inherit cardiomyopathy, but not necessarily be the same type as the parent.

Yeah don't know much about RCM. Statistics not so good on that one, but then it was described as 'rare' so not many patients to sample as yet. Anyway DS is asymptomatic at the mo although structural probs are obviously present, who knows how long it will last.

Sorry sporadic emails from me as I only log on when I'm working!!

Forgot to say, Ds only 2 1/2 bless him. Cardio visits 6 monthly at present. On captropil & asprin, more as a precaution than enything else I think.

Things can develop at any time can't they. Due to DH & loosing a baby to DCM [probably] at 23 weeks [in womb that is]in the past,I was scanned many time during preg and no heart probs detected. But suddenly was pulled in for a scan at 401/2 weeks as baby in funny position and it was immeadiately visible then.

Hi Joanie - my dd had/has DCM as a result of a congenital defect affecting her left coronary. She is much improved following surgery (her EF at dx was 9 %). She still has some LV dysfunction and mitral problems amongst other more minor bits and pieces, and is taking aspirin and enalapril (was previously on captopril).

Dd is 11 and has just started at secondary. She has coped at school without a statement except during her first year. Thankfully her primary was very small, and on one level so she managed without help although has been restricted for PE. Not sure how things are going to go now she's moved up as this school is huge and on 3 levels. Time will tell.

If you think your ds will need help at his school it's never too early to get the ball rolling.

Macwoozy - glad you are still doing so well.

Thanks potty1, and glad to hear your dd is doing as well.

Joanie, what a huge worry you've had, what with your dh and now your ds, I can't begin to imagine the horror of learning that your ds had DCM before he was even born. I too had many foetal cardiac scans and will always remember the anxious times waiting to see what might be found. Do you watch over your ds constantly waiting for any new symptoms to emerge, or are you able to put it to the back of your mind (as much as one can) until the next cardiac scan? I pray that your ds remains asymptomatic and that his DCM doesn't affect him too much.

Thats great news your dh is doing so well after his transplant. How long had he been on the list?

How interesting that you say that people are showing combinations of various cardiomyopathies. I never knew. And that a parent can pass on a different type of cardiomyopathy to their child. I knew that it can be passed on with huge variations in symptoms and progression but never a different type.

Hi Macwoozy & Potty,
Thanks for the posts. Its nice to hear from others in similar situations IYKWIM.
Arggh been too busy at work to post (honestly, what's the world coming to ) But will answer your qs & would love to chat next week.
Perhaps will start a new cardiomyopathy-themed thread then as old one seems to have died!
Gotta go now, cya next weds & take care till then.

hi Joanie, how is peter doing these days?

Misdee, how's Peter? Any more shocks? Has he fought off his infection now?

Joanie, I'll catch you next week then

anti biotics still going in. icd hasa been adjusted so opefully less shocks in future.

oooooooooooo

what was i wearing?

glam? moi?

wish i was lol.

babysick on the shoulder should become glam IMO, plus sticky finger marks on trousers.